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[帕金森病的治疗性教育项目:ETPARK]

[A therapeutic educational program in Parkinson's disease: ETPARK].

作者信息

Ory Magne F, Arcari C, Canivet C, Sarrail M, Fabre M H, Mohara C, Brefel Courbon C

机构信息

Unité des mouvements anormaux, CHU Purpan, place du Dr-Joseph-Baylac, 31059 Toulouse cedex, France.

Unité des mouvements anormaux, CHU Purpan, place du Dr-Joseph-Baylac, 31059 Toulouse cedex, France.

出版信息

Rev Neurol (Paris). 2014 Feb;170(2):128-33. doi: 10.1016/j.neurol.2013.08.007. Epub 2013 Nov 20.

Abstract

We developed a therapeutic educational program in Parkinson's disease (PD). The needs analysis for this program was performed through a survey involving 41 PD patients. This survey questionnaire was elaborated through the analysis of 395 patients' semi-directive interviews, performed in our specialized hospitalisation unit during explanation workshops between 2005 and 2007. We managed to design an educational program tailored to specificities of PD and according to the recommendations of the High Authority of Health in France (HAS). This program was based on individual sessions conducted by a nurse experienced in PD and trained in education. Collective workshops concerning specific themes such as physical therapy, communication, social supports, sleep disorders, stress management, therapies in PD could be proposed to volunteer patients and were performed by the nurse, a physiotherapist and a specialized practitioner. This program focused on skills structured in knowledge, expertise, and learning. It was intended for patients without any motor or cognitive severe impairment. We educated 231 patients between 2008 and 2012 individually and 113 in collective workshops. Patients had an interesting improvement in their self-esteem (6.2±1.4 before and 7.3±1.1 after one year of this educational program). This program has been validated by our regional medical agency and we performed a medico-economic study demonstrating a significant improvement in quality-of-life of educated patients without extra costs.

摘要

我们开发了一项针对帕金森病(PD)的治疗性教育项目。该项目的需求分析是通过对41名PD患者进行的一项调查来完成的。这份调查问卷是通过对395名患者的半指导性访谈进行分析后精心设计而成的,这些访谈于2005年至2007年在我们的专科医院住院部的解释研讨会上进行。我们成功设计了一个根据PD的特点并按照法国卫生高级管理局(HAS)的建议量身定制的教育项目。该项目基于由一名在PD方面经验丰富且接受过教育培训的护士开展的个体课程。可以向自愿参与的患者提议举办关于物理治疗、沟通、社会支持、睡眠障碍、压力管理、PD治疗等特定主题的集体研讨会,这些研讨会由护士、物理治疗师和一名专科医生主持。该项目侧重于在知识、专业技能和学习方面构建的技能。它针对的是没有任何严重运动或认知障碍的患者。在2008年至2012年期间,我们分别对231名患者进行了个体教育,对113名患者进行了集体研讨会教育。患者的自尊有了显著改善(在这个教育项目实施一年前为6.2±1.4,一年后为7.3±1.1)。该项目已得到我们地区医疗机构的认可,并且我们进行了一项医疗经济学研究,结果表明接受教育的患者生活质量有了显著提高,且没有额外费用。

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